Bring back the music.. The Jake Gregg Fund.

$81,309raised of $100,000 goal
81%

Organizer: The Family of Jake Gregg Beneficiary: Jacob Gregg

06/05/13 Update: First and foremost, we would like to thank each & every one of you for the tremendous amount of support, both emotionally & financially over the last few days. We take the time to read every comment, e-mail, text, etc, and it has been simply incredible. Through talking with many survivors & fighters, we have also become aware we set our initial goal extremely low. We are going to set the goal high, and ensure Jake has every opportunity to fight this! Together we can all Bring back the Music!

Several people have also asked for a mailing address instead of PayPal:

The Jake Gregg Fund
PO Box 420
Pittsford VT 05763

Checks can be made out to "The Gregg Family"

Cards and notes of encouragement can also be sent here!

Thank you everyone for your ongoing support!!

Also, we understand everyone would like to see Jake. Unfortunately he currently can not have any visitors due to his extremely weak immune system. Please do not come to the Hospital at this time. When he is ready for visitors, we will let everyone know. Please continue to leave comments of support on here, we will continue to read them to him. 

Following many months of being very sick, at only 20 years old, Jake was diagnosed with Acute Myeloid Leukemia on May 29. AML is a fast acting cancer of the bone marrow and blood, rare in anyone under the age of 65. He was immediately transported to Yale-New Haven Hospital in Connecticut, to be treated by some of the best Doctors in the World. Upon his arrival to the Hospital, Jake also suffered a massive stroke within the first few hours. As a result of this, he is currently paralyzed on his left side, and struggling to speak.

Jake has already undergone many platelet transfusions, apheresis procedures, and started an aggressive 7 day Chemotherapy treatment on May 30. This will be followed with a high possibility of additional chemo treatments and bone marrow transplant.

Jake just finished up his junior year at Lyndon State College, where he has become well known for his extremely high energy while on stage with his band Suncooked. Over the last year Suncooked released their second Album, Straight From the Surface, and continued to grow a loyal fan base. Jake and the boys toured extensively on their own throughout New England and also played several high profile gigs with Dropkick Murphys and The Mighty Mighty Bosstones at sold out venues including House of Blues Boston and TD Garden. Jake has a very rough road ahead of him, and we all want to see him perform again. Please help us bring back the music.

Thankfully, Jake does have medical insurance, as costs are already skyrocketing well into six figures. Unfortunately, the insurance only covers so much. Out of pocket costs are already in the tens of thousands of dollars, and will only go up from here. Please help Jake on his path to recovery by alleviating some of this huge financial burden. No donation is too small, every dollar helps.

Thank you,
The Family of Jake Gregg
Updates

Updates

05/28/2014
by The Family of Jake Gregg
Day 361

Today marks day 361 in our journey. We are so grateful to all the prayers, thoughts, and support we have received from everyone. We would not have gotten this far with out it!

Jacob’s leukemia relapsed in January and the last few months have been filled with highs and lows. They consisted of finally beating the pneumonia in early February and moving back home. We have been traveling to Dartmouth 2 to 3 times per week for blood testing and transfusions when needed. To this point the leukemia has been kept at bay using a drug that targets genes that could allow the leukemia to flourish. That drug appears to have lost some of its effectiveness, so starting chemo treatment today that lasts for 7 days, then off for 3 weeks, then back on for 7 days etc.

The goal is to get to a drug trial that has a much more specific targeting mechanism for the type of leukemia Jacob has. The trials are opening up at multiple hospitals around the country, so right now it is all about controlling the leukemia, getting stronger, and getting to one of them.

A special thank you to all the people involved with putting together the first annual Greggfest at Lyndon State College. Jacob wanted to attend in the worst way, but was too weak at the time. He was able to watch the entire event thanks to collaboration software on the internet.

The high point was Jacob attending the Lyndon State College Class of 2014 graduation ceremonies! Jacob attended as the special guest of President Joe Bertolino and Joe Gittleman. Jacob was introduced to the crowd by President Joe to kick off the ceremonies to a rousing applause. The LSC Family really made him feel welcomed home. It was a wonderful ceremony, with Ry McDonald, Colin Murphy, and Jacob Machel performing the class song. It was the last song that Jacob and Ry had collaborated on before this new journey started. Jacob stood with Joe Gittleman and the other MBI instructors as the graduates received their diplomas. After the ceremonies, Jacob spent time catching up with friends and listening to Red Tin Box perform.

The Yale Team along with the support of the Team at Dartmouth have been great to work with and prepare Jacob for the next steps towards a cure. The journey is far from over, but with everyone's prayers, thoughts, encouragement and support, we know we will get there.

Thank you for all your love, thoughts and prayers,

The Gregg Family
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11/28/2013
by The Family of Jake Gregg

Day 185

Today marks day 42 post transplant. As Jacob continues down his path of recovery, the last month has proven to be especially challenging, both physically & emotionally. Jacob has been struggling with pneumonia for a few weeks, and 
spent the last few days in the intensive care unit battling it. He is now much improved and will be moving back to the oncology floor tonight. He is progressing well with his transplant, currently showing 98% chimerism and bone marrow biopsy shows no leukemia present! Although there has been a few bumps in the road, Jacob continues to move forward!

While it’s true that Thanksgiving comes but once a year, we should celebrate thanks each and every day. We would like to wish everyone a Happy Thanksgiving and thank everyone for all their continued support. Words can not express how grateful we are.

Thank you for all your love, thoughts and prayers.

The Gregg Family


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10/24/2013
by The Family of Jake Gregg
Day 150

It has been a long road since our last update on Day 80. Jake has endured many highs as well as several lows during this time, but ultimately he has made it to his next crucial step of recovery. Jake successfully received his stem cell transplant last Thursday. He has had several rounds of chemo leading up to his transplant, including his strongest round thus far the week prior to transplant to completely eliminate his old immune system. While this process has made him very ill, his team at Yale is monitoring him very closely and so far the transplant is progressing exactly as it should, very promising news!

In the last 2 months Jake celebrated a significant milestone in his life, he turned 21 on September 1st! Several friends and family were able to be with Jake on this day, including his band mates from Suncooked as well another LSC based band, Red Tin Box. The 2 bands played several of their fan favorites and began to attract an audience in the halls. Jake and his friends also enjoyed some more of the very good local pizza and a variety of hospital friendly beers (Root, Ginger, Birch, etc!). It was a very special day for everyone there!

Jake has also continued to make significant gains in his recovery with the Physical Therapy team. He is now at least a year ahead of schedule. He has been walking unassisted, as well as working on fine tuning his motor skills. However, due to the transplant process and the latest round of chemo, his aggressive workout schedule has been put on hold temporarily. The team here has still been able to find low impact ways to continue his rehab though.

Lastly, in mid-August Jake was able to leave Yale for 10 days in between rounds 3 and 4 of chemo, and was able to spend some time at a Rehabilitation Hospital a few towns away. This allowed Jake to not only continue to focus on his physical rehab, but also spend quite a bit of time outside. A very appreciated change of scenery! In addition to this, Jake was able to spend a long weekend back in Vermont before starting his transplant process. 

As we travel this next leg of the journey, please continue to keep Jake in your thoughts and prayers as he continues towards full recovery!

Thank you everyone for the continued support.

The Gregg Family
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08/14/2013
by The Family of Jake Gregg

Day 80

Tonight we heard the one word we have been waiting for…REMISSION! The 3rd round of Chemo was especially hard. It was 10 times stronger and pushed Jacob to the limits. It kept his key blood counts down much longer, prolonging recovery and timing for the marrow biopsy. On Tuesday (day 28 of the third round), the biopsy was done, and we received the results this evening.

Jacob celebrated with a Pizza, from a local pizza place, opting out of the normal hospital fare. We feel like we have rounded the corner at the far end of a marathon course. We are headed for the finish line, but there is still a long way to go. In the upcoming weeks, there will be a consolidation round of chemo as prep for the stem cell transplant, followed by a similar recovery period as any normal chemotherapy regimen.

Thank you again for your continued support and kind thoughts and prayers!

The Gregg Family


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07/18/2013
by The Family of Jake Gregg

Day 51 Update

Jacob entered into his third round of Chemo treatments yesterday afternoon. These will go on for the next 6 days. He continues to make great progress with physical therapy, with improvements every day. His appetite remains very healthy, consuming between 2500 to 3000 calories a day. He can sure pack it in!

Some friends have also organized a Texas Hold’em Poker tournament, if you in the Rutland area and would like to participate, please check out the details below.

Thank you for all your prayers and thoughts!

The Gregg family



Texas Hold ‘em Benefit for Jake Gregg

Friday, July 26, 2013

Where: Bryan Johnson’s Pavilion: 1642 East Street, Clarendon, VT. Kick-off at 5:30pm, Cards start at 6pm.

Buy-in 70$, 1 add-on, 1 Re-buy, Payout will be 50% of buy-in and 100% of re-buys minus minimal expenses. Best hand 10$--winner take all. 50/50 raffle will also be held.

Come and enjoy a night out and support Jake, who is being treated for acute leukemia. Light refreshments and soft drinks will be provided, and there will be a cash bar!

Questions: Call Tom DiPalma at 802-236-4025

Directions: From Rutland: Take Rt. 7 south 2 miles past the intersection with VT 103, take left onto Bump Road all the way to the end and take Right turn. Go ½ mile, Bryan’s house is the first house on the Left.


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07/09/2013
by The Family of Jake Gregg


Day 41 of Recovery

It has been quite a journey in a short time. It feels like an eternity, but 41 days really is not that long if you think of it as part of a lifetime. Jake has been right on track in his fight with AML. The second chemo infusion ended 12 days ago, and he came through it well. In the meantime, we have been working physical therapy and exercise all targeting activation of the left side, and overall physical fitness. He was in great shape when he became ill, and it is showing in his recovery. He is very tight, so stretching is a big part of the work out.

We started the 4th with a little John Phillips Sousa “Stars and Stripes forever” and we were able to enjoy the New Haven Fireworks from a window in the hallway. They had quite a show.

Saturday night we saw the first wiggling of his fingers on the left hand on command. We continue to keep working them and getting the kinks worked out!

Look out banjo, a strummin’ is a comin’!

Thank you again to everyone for your prayers and positive thoughts! We feel it and see it every day helping us through this ordeal. We still have a long way to go, but we are off to a good start!

The Gregg’s


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06/24/2013
by The Family of Jake Gregg

Day 26 of Recovery

The results from Jake’s first bone marrow biopsy came back late Friday night, June 14th. They were discussed by the teams of Doctors both here at Yale, and at Dana Farber in Boston throughout Saturday. The decision was made to wait until Wednesday, June 19th, and perform a second bone marrow biopsy to determine the best treatment path to follow. Those results came in late Thursday night, and on Friday morning, it was decided that a second chemotherapy infusion (similar to the first, but scaled back to 5 days) was the next step and would start later that day. This should hopefully spare Jake a much higher dosing later down the road as he prepares for a bone marrow transplant. The drawback is he will remain neutropenic (highly susceptible to infection) for an additional 4 weeks as he recovers, which means he cannot leave the hospital or begin to have visitors during this time. It also delays the moving to a dedicated rehabilitation facility for more aggressive physical therapy. Jake will continue his daily therapy with the hospital PT staff, to keep body parts moving, by both stretching and strengthening.

PT has continued to go well and shown significant progress. Initially, it took several people to stand Jake upright, having to support all facets of his body. After only 4 days, Jake is now able to keep his legs and hips steady with gentle reminders to hold his torso and head up. He has also shown that when he puts weight on his left leg, muscles are activating to keep him upright, which is great news as the primary goal has been to continue to teach and reactivate left side muscle control. With heavy coaxing, and lots of support, he has walked across the room twice which was very exciting. With Jake’s now ongoing PT, he also received a new pair of Vans yesterday and can officially retire his old pair, much to his therapist’s delight.

We want to thank everyone for all of the ongoing support, cards, notes, posts, tweets, prayers, thoughts, and conversations. It gives him and us the strength to keep pushing forward towards recovery. Jake will finish his second round of chemo Wednesday afternoon and will have another biopsy shortly after. Please continue to send positive thoughts and prayers his way.

Thanks again

The Gregg’s


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06/15/2013
by The Family of Jake Gregg
Day 17 of recovery

The last few days have been incredibly eventful! Since the last update, Jake moved from the Neuro ICU Wednesday evening to the Medical ICU step-down unit where he stayed until Friday afternoon. Then it was onto the 12th floor Oncology-Hematology unit where he is going to be staying for the next four weeks or so. It is a great room!
Along with the moves came some big changes, Jake is speaking louder and more clearly than ever. He passed the swallow test and started eating real food on Thursday! For those that are wondering, his first meal request was Prime Rib. Unfortunately it wasn't on the hospital menu, even though it is extensive. He settled for meatloaf and mashed potatoes with steamed carrots, Vanilla ice cream, and ginger ale. (no ginger beer on the menu either, darn it!). Once he had a few meals under his belt and had shown good conversion of his intake, they pulled the GI Tube (finally!) and he is now eating and drinking on his own! It's been a great relief to be able to chat and joke with Jake and things are certainly starting to take a more relaxed atmosphere in his room.
It's been an eventful couple of days, and attention has been turned to his left side deficit. Physical therapy has started, they have moved him from sitting to standing to sitting in a chair. Everything is about getting the left side restarted and strengthening the right side. An interesting side note, if you youtube search "wof jan 25, 2010", the winner of that show, Dawn, is leading his PT effort. Jacob is making some awesome progress and continues to be right where the doctors are expecting and hoping him to be at.
Thanks to everyone for all of the cards, well-wishes, thoughts, prayers and support! It's meant a great deal to all of us and it's helping us every day!
Thanks again, 
The Gregg's

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06/11/2013
by The Family of Jake Gregg

Day 13 of recovery

Like every day in this situation, today was a better day than yesterday.

Jake had a lot of good things going for him today, he's very close to passing his swallow test, another couple days and he should be good to go! Once he passes he'll be able to finally get rid of his (much hated) GI tube and he can start taking food/fluid/medications orally on his own. Today was his closest attempt yet, they're going to come back in the next couple days and give him another whack at it.

He has been pretty tired the last couple days, at this point he's capable of bursts of activity for an hour or two, then he crashes for a nap. He's not sleeping well at night, so we hope in the next few days his sleep schedule will normalize and he's able to stay awake longer and sleep better in the evenings.

Jacob's also begun to speak more often and more clearly, Josh is no longer the only person who can understand him when he tries to get his message across. He's still having some trouble writing and typing, but it will come with time. He has also been assigned a team of therapists, including a speech, physical, and occupational.

He's also now weened off of all of the sedatives, so the only painkiller he's getting in any real form is Tylenol and that's mostly to keep his fevers down. The fevers remain to be an ongoing battle, but they seem to be less severe than they were in previous days.

Everyone here at Yale-New Haven continue to be great and despite the long road ahead, we're remaining very optimistic that Jake is going to make a full recovery!

Thanks to everyone for their kind thoughts, words, and ongoing support. They continue to be a constant source of support for Jake and the rest of us and definitely help keep our spirits up!

Thanks again,
The Greggs


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06/08/2013
by The Family of Jake Gregg
Day 11 of recovery 

Things continue to improve for Jacob, one day at a time. 

Jake's starting to be weened off more and more support systems; He's now completely off of supplemental oxygen, the constant pain-killer drips are beginning to slow down, and with his fevers becoming less aggressive the cooling blanket is being used less and less.
He's starting to become more alert as well, interacting with us more and more despite his speaking remaining very labored and difficult. As time goes on, we're expecting things to come back but at this point it has become a waiting game. 
His recovery remains right on the schedule his Doctors are hoping for and we are hoping that things continue to go as smoothly as they have the last couple of days. 
We can't say enough how much the support has meant to us during this time, we are amazed and thankful at the number of friends and family who have reached out with their thoughts and prayers and we appreciate every single one.
Thanks always,
The Greggs

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06/07/2013
by The Family of Jake Gregg
Day 9 of recovery

Jake's condition continues to slowly but steadily improve. The running mantra here in New Haven has been "Today is better than yesterday".

Jacob has continued to say words, and since Wednesday afternoon, some very short sentences, albeit very slowly and softly. He has asked for specific genres (Ska, Reggae, Jazz), Bands (Grateful Dead, Mighty Mighty Bosstones, Bob Marley, Dropkick Murphys, etc), even specific albums (Europe '72).

Last night Jake finished his last dose of his 7-day chemo induction, with that his white blood cell count is effectively zero and he has become neutropenic. Basically this means he has no immune system and is very susceptible to any disease. He is being proactively treated with antibiotics, but we still have to be very cautious.

With today's CT scan we were informed that the swelling in Jake's brain has finally started to subside. It's a very small change, but it's progress!

His breathing patterns continue to improve. Since having the ventilator removed Jake has been hooked up to a high-flow nasal canula system which he is now being weened off of. He started at an oxygen flow of 40 Liters/min and has steadily progressed down to 3 liters/min. These are all good signs and by all accounts his recovery is right on track!

Thanks again to everyone who has sent support and thoughts our way, we can't begin to describe how much it has meant to our entire family to see people rallying to help us in this tough situation.

Thanks again,
The Greggs
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06/05/2013
by The Family of Jake Gregg
A note from Joe Gittleman, bass guitar for The Mighty Mighty Bosstones & Jake's Teacher at LSC, and all around great guy.


Thank you, thank you, thank you to any friends who helped the Gregg Family reach their initial fundraising goal. There is still more work to do! 


For those of you who may not be aware of my connection here: Jake is one of my students at Lyndon State College in Vermont. Jake entered our Music Business and Industry Program three+ years ago as a young freshman. We formed a bond quickly, due in part to our shared love of ska and punk music. In fact, Jake is one of the few students I have who actually grew up listening to the Bosstones. As time went by, I became increasingly aware of Jake's incredible talent as a musician and songwriter. If you have ever had a friend who is a complete natural at something, you understand how Jake is with music. Eventually Jake and his band Suncooked shared the stage with the Bosstones but that's a whole other story... 

I just want anyone who doesn't know Jake to hear a bit about him and maybe get a better understanding of why all those who love him are working so hard on this fundraising effort. Jake Gregg is: Incredibly warm, open hearted, Intelligent, friendly, generous, creative, thoughtful and kind (just for starters!) Jake dwells only in the positive and adds so, so much to the world. 

I know in my heart we'll hear more music from Jake but he'll need help along the way. Please share this and give when you can.

With sincere thanks,

Joe

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06/04/2013
by The Family of Jake Gregg
I'd like to share an e-mail with everyone we received today:

Hi,

My friends step daughter posted this link on facebook. I'm sorry Jake has cancer but I want you to stay strong! Cancer is a family disease but only Jake has the physical effects. I was diagnosed with AML JULY 2, 2002. I was 3 weeks away from my 29th birthday. I had a BMT on Sept. 26, 2002 and I have been cancer free ever since. My brother was my donor and I do have CGVHD ( chronic graft vs. host disease) but I'm alive and happy. My biggest advice is to never give up and for Jake to try and envision his life after treatment ! It's hell and unfair allow yourself to be angry, sad and scared but SNAP out of it and carry on! It's war and you need to refuse to lose! GERMS! Don't let anyone near him, don't under estimate GERMS! If someone has a sniffle, they can't come near him. It's critical that you keep as many germs away from him as you can. I got MRSA in my Hickman/port & pneumonia during my BMT and I am still here! DON'T GIVE UP ! Pray Pray Pray. All my best! Maureen   Survivor and Ass Kicker of Cancer.

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06/04/2013
by The Family of Jake Gregg
Day 6 of recovery

Over the last few days Jake has gradually improved with a series of small accomplishments. On Sunday, they were able to unintubate him after breathing on his own for a few hours. While he wasn't ready to speak at first, he has struggled to add a few words to his limited vocabulary. He currently says "water" when thirsty, "Josh" when he wants something the Nurses have already told him 'no' to, and answered "2013" & "Obama" to current year and President. He was also able to play a game of "Thumb wars" with his Dad and Josh. All very good signs. Unfortunately, we also became aware that he is currently blind in his left eye. We are hopeful that will go away as the swelling continues to go down. 

His room is starting to look a little bit more open as they removed the ventilator from his room and with it some of the fear that they need to reintubate him. Overall his condition is getting better, albeit incredibly slowly. 
His cognitive ability is still about where it has been since the beginning, although we were very excited to see some of the first voluntary movement on the left side of his body today! When one of the great nurses here was giving a neuro-exam and tried to illicit a pain response, Jacob raised his left arm and rolled his left leg in response! Progress! 
He still has his OG-Tube through his nose so they can give him food and medications as he still lacks the ability to swallow and he isn't speaking. Today we couldn't get any of the responses that we achieved in the last couple days. Tonight we also learned his white blood cells are now at 600, down from 400,000+. This is on track for the chemo treatment, and gloves and masks are now required to be with him.
As a family we're overwhelmed with the incredible response we've gotten from our many friends, family members, and all of the perfect strangers that gave so willingly! It means a lot to see so much support come out for Jacob! He's certainly a special dude and everyone is looking forward to him getting back on his feet and his feet back on stage! Thanks to everyone for their thoughts and generosity in this tough time!

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